Mississippi
MCHB GRANT ABSTRACT
Project Title: Integrating Services for Children with Special Health Care Needs
Project Number: (CFDA #93.251)
Program Director: Roy Hart
Phone: (601)576-7441
Organization Name: Mississippi State Department of Health
Address: 570 East Woodrow Wilson Boulevard
Jackson. Mississippi 39215-1700
Contact: Person: Roy Hart
Phone: (601)576-7441
Fax: (601) 576-7540
Email: rhart@msdh.state.ms.us
Project Period: 4 year
From: 3/31/2001 To: 3/30/2005
Organizational Setting:
Early Hearing Detection and Intervention in Mississippi (EHDI-M) functions as part of the First Steps Infant and Toddler Early Intervention Program (FSEIP) which implements Part C of IDEA in Mississippi. FSEIP is located within the Mississippi State Department of Health's (MSDH) Office of Personnel Health Services (OPHS), which is responsible for all Maternal and Child Health (MCH) functions. EHDI-M is MSDH's designated program authorized by state statute to establish an early identification system and to identify a statewide family-centered comprehensive service delivery system of developmentally appropriate services for infants and toddlers with hearing impairments, coordinated within the child's medical home.
Purpose:
Mississippi is currently screening 99% of the babies born in this state for hearing loss. The purpose of this project will be to improve the number of these children who are diagnosed and enrolled in intervention programs before they are 6 months of age.
Challenges:
The Mississippi Legislature placed into law a mandatory statewide requirement for hearing screening that began July 1, 1997. A review or MSDH's Vital Statistics reveals that in 1997 and 1998, there were 41,527 and 42,917 live births, respectively, in Mississippi. Applying available national incidence rates to these two cohorts, Mississippi should yield a total of 252 newborns with congenital hearing impairment. However, to date only 62 of the expected 252 babies with congenital hearing loss have been identified.
Goals and Objectives:
There are two major goals for this project. The first goal is to develop comprehensive, collaborative tracking and follow-up procedures to improve the numbers and timeliness of referrals into intervention. The second goal will be to establish a statewide training program directed toward audiologists, speech pathologists, physicians, interventionists, educators, and parents on the importance o early identification and intervention for children with hearing loss.
Methodology:
In order to achieve the stated goals, the EDHI-M program will develop specific, time-based procedures for follow-up and tracking. To accomplish this, the program will work cooperatively with First Steps Early Intervention District Coordinators, MCH nurses, and Genetics staff to draft procedures that can be incorporated into the job responsibilities of each agency. Procedures will be clearly and comprehensively written. Forms used for tracking and follow-up will be fine-tuned, making them more effective. Finally, individuals participating in the identification arid intervention processes will be trainee regarding the procedures, forms, and their importance. This will be accomplished through training meetings between EHDI-M and each group and/or individual professional involved.
A comprehensive statewide training initiative will provide training to audiologists, early intervention and MCH staff, audiologists, hospital staff, physicians and parents regarding appropriate referral and tracking procedures and/or the importance of early identification and management of hearing impairment in children.
Evaluation:
The results of these efforts will be evaluated in the following ways:
1. Results of screening, diagnostic and intervention reporting forms will be evaluated for numbers and timeliness of service provision. This data will be obtained from hospitals, diagnostic centers, early intervention district personnel, and Hearing Resource coordinators (HRC's).
2. Parent participation and satisfaction will be monitored through patient satisfaction surveys and family needs surveys.
Text of Annotation:
The hospitals in Mississippi are doing an excellent job of identifying children who are at risk for hearing loss. Unfortunately, the number of these children actually .making it through the diagnostic process and into intervention is disturbing. The purpose of the project will be to improve the numbers and timeliness of referrals into intervention. This will be accomplished by developing comprehensive and workable tracking and follow-up procedures, education of professionals and parents at the local level, and careful monitoring of the statistical data being returned from all levels of the screening and identification process.
Key Words:
Early Intervention, tracking and follow-up, procedures, collaboration, education. Infant. Toddler Part C. audiologist, speech/language pathologists, physicians, parents
Narrative
CHAPTER I. PURPOSE OF THE PROJECT
The Mississippi Legislature statutorily mandated the establishment of a statewide universal newborn hearing screening program that began July_ 1, 1997 (see Appendix, page 50). Under the authority of this mandate, the Early Hearing Detection and Intervention Program (EHDI) was established. In Mississippi, there are approximately 42,000 births annually. Since 1997, EHDI-M has screened an average of 91% of all live births annually for a cumulative total of l 15,258 babies screened. Comparing Mississippi's population with national statistics, the expected number of children with congenital hearing impairment identified for this time period should be approximately 378. For the same period of time only 95 babies have been diagnosed with a hearing impairment (see Appendix, page 84). The purpose of this project will be to increase the number of children who are diagnosed with hearing loss in a timely manner and enrolled in intervention programs before they are six (6) months of age.
Based on national statistics, Mississippi is close to identifying an appropriate number of severe to profound hearing impairments, but falls short of national statistics for diagnosing mild to moderate hearing impairments (see Appendix, page 84). The Early Hearing Detection and Intervention Program of Mississippi (EHDI-M) believes this is the result of several factors. First includes family perception of the need to attend follow-up diagnostic audiological appointments. Families of babies who do not pass screens unilaterally or do not pass but seem to have acceptable hearing, do not always follow through with necessary diagnostic appointments. Also, there are a certain number of families who, for various reasons, fail to follow through with the screening and diagnostic component of the screening process regardless of the potential for hearing loss. These reasons may be related to lack of education, transportation or concerns about costs. Second, the audiology community is somewhat reluctant to diagnose newborns/infants with marginal levels of hearing impairment, or is reluctant to diagnose milder degrees of loss in a timely manner. This may be due to lack of necessary diagnostic equipment and skills while providing audiological services to infants. And finally, there is concern that these families are not being encouraged by their primary care physician to follow through with audiologic assessments. Because of the small number of infants with hearing loss being diagnosed in a timely manner, it is imperative that a strong monitoring and tracking system exist between EHDI-M and district and local level FSEIP staff, Maternal and Child Health (MCH) staff, audiologists and physicians to ensure involvement of the child's primary care physician.
As part of this project EHDI-M will develop a comprehensive state and regional training initiative to improve diagnosis and management of hearing impairment in children. This training will be geared toward audiologists, speech/language pathologists, county health department medical staff, intervention providers, physicians, and parents. It is strongly believed that through a comprehensive statewide training effort and collaborative follow-up and tracking efforts, Mississippi will be better able to meet the important goals of diagnosing and amplifying infants with hearing loss by three (3) months and enrolling them in appropriate intervention programs by six (6) months of age.
CHAPTER II. ORGANIZATIONAL EXPERIENCE AND CAPACITY
The Mississippi State Department of Health (MSDH) Bureau of Child and Adolescent Health (BCAH) is responsible for the implementation of Maternal and Child Health programs and services such as the Children with Special Health Care Needs (CSHCN) program, Genetics and Metabolic Screening Program, Birth Defects Registry, and the First Steps Infant and Toddler Early Intervention Program (FSEIP). (see Appendix page 56.) EHDI-M has been established as an integral pair of die MSDH FSEIF, which is responsible or tae implementation of Part C. IDEA. FSEIP will continue to provide necessary resources for procurement of equipment and supplies for EHDI-M. Since EHDI-M functions as part of FSEIP, EHDI-M activities and personnel are integrated with those of the Part C program. Each child identified by EHDI-M is entitled to the full array of early intervention services as required by Part C and state law. EHDIM has the potential to effectively increase the number of babies screened per year to 100% and to ensure adequate provision of early intervention service to all eligible children with hearing impairments. For this reason, EHDI-M is in an ideal position to enlist collaboration for tracking, follow-up and monitoring goals.
Through the FSEIP a comprehensive data collection and management system has been developed and implemented to capture screening data-in its raw form from hospitals statewide. The data is transmitted to EHDI-M via floppy disks from hospitals and others consistent with Individuals with Disabilities Education Act (IDEA) Part C, 34 CFR 303.321.. All data is maintained confidentially by EHDI-M in compliance with applicable IDEA, Family Education Rights and Privacy Act (FERPA) regulations, and other laws and regulations. The FSEIP has a dedicated Senior Systems Administrator to provide on-going support to address data collection, management, and reporting issues. The Bureau of Child and Adolescent Health currently is in the process of developing a centralized data management system with a "core" set of data using genetics and metabolic screening data due to its completeness. The goal is to develop an unduplicated set of data for each individual child/family served by any Bureau program. This will improve the effectiveness of the Bureau's programs and services and also improve the accuracy and timeliness of information. Care coordination will be improved through increased MSDH provider knowledge of services being provided to children and families. Unfortunately, the development of the systems is on hold due to fiscal issues.
Since its inception, and statewide implementation, the EHDI-M program has incorporated recommendations and standards for operation consistent with the American Academy of Pediatrics, Joint Commission on Infant Hearing, and the Centers for Disease Control and Prevention. EHDI-M sought the assistance of the MCH Marion Downs National Newborn Hearing Program at the University of Colorado in Boulder to ensure consistency in operations with other state hearing screening and intervention programs. Like hospital based genetics/metabolic screening, newborn hearing screening has been adopted as a standard of care in Mississippi.
EHDI-M has demonstrated leadership by providing training, in-service, and support to, hospitals, audiologists, speech language pathologists, deaf educators, hospitals, nurses and parents using nationally recognized experts. EHDI-M presented at the Mississippi Speech-Language Hearing Association (MSHA) fall 1999 conference regarding the current status of the program and available intervention programs throughout the state. In the spring of 2000, EHDIM sponsored Dr. Louis Rossetti as a speaker at the MSHA conference. Dr. Rossetti spoke for two days on early intervention for special populations of infants and toddlers. Also in the spring. of 2000, EHDI-M presented an overview of Mississippi's program at the National Black Speech Language and Hearing Association (NBASLA) conference held in Jackson. In June of 2000, EHDI-M organized and sponsored a conference in collaboration with the Mississippi Department of Education (MDE) for parents and providers interested in oral communication.. Speakers for this engagement were Betsy Moog Brooks and Valerie Frigo of the Moog Oral School in St. Louis. Finally, EHDI-M has agreed to sponsor a speaker from the Hannon Centre, Toronto, Canada for the 2001 MSHA Spring Conference.
The EHDI-M has also demonstrated a willingness to promote grassroots interest in childhood hearing loss through the development of district level hearing intervention taskforce meetings. By organizing conferences and meetings and sponsoring speakers, EHDI-M has the, capacity to reach service providers at the local level and effect positive outcomes for the diagnosis and management of hearing loss in infants and children.
CHAPTER III. ADMINISTRATION STRUCTURE
MSDH operates under policy guidance of the State Board of Health, a 13. member group of providers and consumers who serve in gubernatorial-appointed, overlapping terms. MSDH has statutory authority to "make and publish all reasonable rules and regulations necessary to enable it to discharge its duties and powers and carry out the purposes and objective of its creation ... (Section 43-3-17, Mississippi Code of 1972 as amended)". MSDH serves Mississippi through a unified public health department in each county (with the exception of two counties which share a health department), for a total of 108 clinics throughout the state. The State is divided into nine (9) public health districts as part of the state system. (see Appendix pages 5455) MSDH staff includes public health nurses, nurse practitioners, physicians, disease investigators, environmentalists, medical records clerks, social workers, early intervention coordinators, and nutritionists. Every county provides all general public health services in an integrated service delivery manner.
MSDH is the state agency responsible for administration of the Maternal and Child Health (MCH) Block Grant. MCH Block Grant funds are allocated in the central office to the Bureau of Women's Health and the Bureau of Child and Adolescent Health. These two Office of Personal Health Services (OPHS) bureaus provide services for the three major populations targeted by the MCH Block Grants, two of which are women and infants and children with special health care needs. Children's Medical Program (CMP), the Children with Special Health Care Needs (CSHCN) program, exists organizationally along with FSEIP in the Bureau of Child and Adolescent Health. All of the above mentioned bureaus and programs are located organizationally within the Office of Personal Health Services (OPHS), one of the five offices providing the programmatic oversight. This project will- enhance FSEIP's ability to carry out child find responsibilities under Part C of IDEA. As part of FSEIP, EHDI-M is MSDH's designated program authorized to establish an early identification system and a comprehensive service delivery system of developmentally appropriate services for infants and toddlers with hearing impairments.
CHAPTER IV AVAILABLE RESOURCES
Mississippi Legislature passed a law entitled "Hearing Impairment of Infants and Toddlers" in 1997. This statute designates the MSDH with the responsibility to collect all necessary data in order to establish an Infant and Toddler Hearing Impaired Registry. Additionally under this statute, an Advisory Committee was established by he State Health Officer, which subsequently approved the criteria for gathering screening information from the delivering hospitals. The Committee supports the need for information consistency, diagnostic equipment protocols, timely appropriate audiological assessment, and developmentally appropriate amplification and intervention. The State statute governing newborn hearing screening in Mississippi is currently being revised with input from the Advisory Committee and others.
EHDI-M, as a part of the FSEIP, continues to receive fiscal resources under IDEA, Part C to purchase hearing screening supplies and screening and diagnostic equipment. Automated Auditory Brainstem Response (AABR) screeners have been purchased using IDEA Part C funds over the last four (4) years. Additionally, Part C resources are used to provide contractual support for personnel for EHDI-M. Contractual staff includes a part-time Audiology Consultant whose current responsibilities are development of the Hearing Aid Fitting Protocols and participation in the Advisory Committee. Audiologic Assessment Protocol/Guidelines was drafted and disseminated in the spring of 1999. Intervention consultation staff consists of five (5) part-time Hearing Resource Coordinators (HRC). These individuals are an integral part of EHDI-M in that they are knowledgeable about hearing loss, communication options, available state resources for hearing-impaired children, and EHDI-M procedures. Because they are located in various regions across the state, the HRC's provide a means by which consistent information, procedures and services are provided across Mississippi. As part of their duties, HRC's meet with families of children newly identified with hearing loss to ensure that they have a complete understanding of hearing loss and the available communication options and resources available to them. They actively participate in the development of Individualized Family Service Plans (IFSP) and assist with transitioning children to services under IDEA, Part B at age three (3). Currently HRCs are finalizing a free Parent Information and Resources manual that will be distributed to parents and professionals. The HRC's encourage parent support groups and provide consultation to audiologists, FSEIP and MCH staff, hospital staff, and physicians regarding the importance of early identification of hearing loss and available resources. With assistance of public health district and local FSEIP staff, HRCs have organized regional taskforce groups composed of audiologists, speech/language pathologists, interventionists, physicians, early intervention staff, representatives from the deaf community; and parents.
At present, EHDI-M has a complement of three full-time staff positions that are 100'0 state funded. The FSEIP Division Director provides oversight for all EHDI-M and FSEIP activities to ensure consistency with IDEA, Part C. Establishing EHDI-M within Part C's early intervention program allows for maximization of resources and improved coordination of care.
The Nurse Administrator for EHDI-M is responsible for direct oversight of the program. This individual provides supervision of EHDI-M staff and contractual staff, implements peer-to-peer technical assistance and training for hospital staff, and acts as a liaison between hospitals, diagnostic centers and the health department. The EHDI-M nurse administrator is the official agency contact for Directors of Speech and Hearing Programs in State and Welfare Agencies (DSHPSHWA) and the MSDH contact to the Centers for Disease Control and Prevention concerning universal newborn hearing screening and intervention: This position is full time and state-funded.
There are two full-time, state-funded Health Program Specialist, Senior positions in EHDI-M; one serves as Hearing Screening Coordinator and one as Diagnostic/Intervention Coordinator. The Hearing Screening Coordinator is responsible for the day-to-day management of the hospital screening component of the program. The duties of this position consist of managing the hospital data system, carrying out the objectives whereby EHDI-M will obtain a 100% hearing screening rate, and ensuring that all infants who do not pass the hearing screen will consistently be referred for a diagnostic assessment/evaluation by and audiologist. Additionally, the Hearing Screening Coordinator provides on-site consultation and technical assistance with the hospitals, negotiating lowest supply cost for hospitals, and evaluates hospital statistical data.
The Diagnostic/Intervention Coordinator is responsible for the day-to-day administration of the statewide diagnostic and intervention component of this project. This coordinator collects, analyzes and reports on diagnostic and intervention statistical data. She reviews assessment data to document the percentage of newborns obtaining diagnosis by three (3) months of age and provides the referral to early intervention service coordination staff when appropriate.
FSEIP Senior Systems Administrator allocates necessary time to EHDI-M to assist in the management of the registry and data. A pediatric medical consultant with the MSDH Bureau of Child Health allocates necessary time to EHDI-M. She attends state Advisory Committee meetings and reviews EHDI-M policies and procedures and ensures adherence to the AAP guidelines regarding statewide universal newborn hearing screening programs.
EHDI-M staff is housed in the MSDH central office complex and shares a general office area with the Genetics Program, FSEIP and the Mississippi Chapter of the AAP. The central office of MSDH has a Local Area Network (LAN) with connections throughout the health department. District and county health departments are connected via a Wide Area Network (WAN). MS Windows NT servers within the OPHS provide data storage capacity and the potential for development of a distributed data management system. The FSEIP and EHDI-M central office staff and the public health district FSEIP staff have access to networked personal computers. Raw screening data from hospitals is entered electronically into the EHDI-M data management system. An audiologic intervention data system , is in the final stages of development and will be. implemented by the end of 2000. This system will allow for tracking of diagnostic services and intervention through the use of a child's IFSP.
CHAPTER V. IDENTIFICATION OF TARGET POPULATION AND SERVICES AVAILABLE
According to the 1990 U.S. Census, Mississippi's population was approximately 2.6 million individuals. Mississippi residents live in 82 counties, which include 290 incorporated cities, towns, and villages. Fifty-three percent of the population resides in rural areas as. classified by the Census Bureau. Less that twenty percent of the population live in a standard metropolitan statistical area (SMA). The racial composition in 1990 was 63.4 percent white, 35.6 percent black and one percent other races. There has been an influx of persons of Hispanic origin in several areas of the state during the last several years. There are some geographic disparities in health care delivery in Mississippi. The vast majority of health care personnel are concentrated in the larger cities, leaving most rural areas with access to provincial rather than comprehensive care. MSDH's nine districts cover several distinct geographic areas within the state (see Appendix, page 54).
On average, Mississippi has approximately 42,000 births per year. All babies born within the geographical boundaries of Mississippi have access to the state hearing-screening program regardless of place of residence. In 1999, there were 41,747 babies born in Mississippi, of which 41,617 (99.7%) were born in hospitals with universal hearing screening. The remaining .03% obtained their screen post discharge or as early as their existence is determined, usually upon application for a birth certificate from the MSDH's Vital Statistics Program. Presently, all delivering hospitals within the state participate in the statewide universal hearing-screening program.
Of the infants screened since 1997, only 95 babies have been diagnosed with hearing impairment. Comparing Mississippi's population with national statistics, the expected number of congenitally hearing-impaired newborns to be identified for the two years should be approximately 378. The large majority of these diagnosed infants had hearing loss falling into the severe to profound category.
1n the spring of 2000, all of the screening hospitals and most of the diagnostic centers were visited in order to determine the nature of some of the delays in diagnosis. From those visits, the following concerns became apparent:
With comprehensive tracking and follow-up procedures, in which all hospitals, audiologists, and parents receive ongoing training, it is expected that the program's goal, of ensuring 100% of hearing-impaired infants receive audiological assessment by three (3) months of age will be met. EHDI-M will enlist the cooperation of local FSEIP district level staff, MCH nurses, diagnostic centers and hospitals. Each entity will provide input into the refinement of procedures and EHDI-M will provide ongoing training in the use of forms and relevant procedures.
Statistics indicate that Mississippi is close to identifying an appropriate number of severe-to -profound hearing impairments, but falling short of national statistics for diagnosing mild-tomoderate hearing impairments. Further, diagnosis of babies referred from hospital screening programs takes an average of 9 to 12 months to confirm. This suggests a need for on-going, comprehensive training .in the diagnosis, management and impact of milder degrees of hearing loss. A state level taskforce is being assembled with representatives from the intervention, education, and the Deaf communities, and parents in order to develop regional and state level inservice training and advocacy. Additionally, a more direct approach to providing technical assistance on diagnosis and management of hearing impaired infants will. be implemented through mentoring.
CHAPTER VI. NEEDS ASSESSMENT
In 1996, MSDH's newborn hearing screening program completed a state hearing screening needs assessment. This assessment noted which hospitals were performing universal and non-universal newborn hearing screens. An additional needs assessment was conducted to evaluate the states' diagnostic audiological assessment and amplification capacity. These studies revealed the absence of any significant hospital-based universal newborn hearing screening programs. At the time, there were approximately 90 licensed audiologists in the state, but less than 10% had experience, equipment, or funding acceptance plans to meet the needs of the state upon implementation of a universal newborn hearing screening program. In 1997, MSDH awarded each of four (4) facilities in the state contracts for $60,000 each to obtain diagnostic equipment to ensure students in audiology and speech language pathology schools obtain appropriate clinical experience - with diagnostic audiological assessment/evaluation and habilitation of newborns/infants prior to graduation. Also, beginning in 1997, MSDH has contracted with four (4) diagnostic centers to develop regional diagnostic capacity. These are located at University Medical Center's Communicative Disorder Laboratories in Jackson, the University of Southern Mississippi in Hattiesburg, North Mississippi Regional Center in Oxford, and the Mississippi University for Women in Columbus. FSEIP is the payor of last resort for diagnostic evaluation and intervention services assuring that all Mississippi children have access to these services consistent with IDEA Part C. In the Spring of 2000,, informal site visits were. made with most of the screening hospitals and the diagnostic referral centers. Current issues facing the facilities were discussed previously on page 12.
In spite of efforts to make diagnostic testing services available, the numbers of babies being diagnosed in a timely manner remains low. There is an urgent need to determine what impedes the timeliness of diagnostic services. By developing a network for follow-up and tracking, EDHI-M will be able to determine and minimize the primary barriers to diagnosis and intervention. To meet this goal, FSEIP policies and procedures will be implemented to enlist local and district level FSEIP and MCH staff and Hearing Resource Coordinators in locating and encouraging these families to obtain further hearing evaluation and subsequent intervention. All entities will need to be trained on their role and the new procedures and on the importance of early diagnosis and intervention. This will be done through revision of tracking forms and training on new procedures and forms with all personnel involved. Further regional workshops and sponsorship of statewide conferences will provide acceleration in the knowledge and skills of Mississippi's professional community, ensuring improved diagnosis and management of children with hearing loss.
The need for recruiting three full-time HRC's to serve in three separate geographic locations is warranted. Currently, EHDI-M has employed 5 part-time contractual HRC's. 1n order to meet the increased demands of this project, the HRC's will need to be available to devote more time to tracking, follow-up and training efforts. Along with FSEIP. staff, HRC's will meet with key physicians and public health departments in their districts to provide information and materials regarding the effects of undiagnosed hearing loss on. speech/language, cognitive and social development. Each physician and public health department will be provided with a comprehensive developmental chart for their waiting room, a variety of selected brochures, the Joint Commission on Infant Hearing (JCIH) screening position statement and, informational video tapes on the importance of infant hearing and acquired hearing loss to be shared with parents or viewed in waiting rooms.
In addition to meeting with physicians, training local health district personnel and organizing and presenting regional level workshops, the Hearing Resource Coordinators will continue to meet with families of children with newly identified hearing loss. They will explain the availability of home intervention programs, communication options, and answer any hearing related questions the family may have. They will also participate in the development of individual Family Service Plan (IFSP) for each child with hearing loss in order to assure that the intervention services being considered are appropriate and understood by the families. If the family wishes, the HRC will be available to assist with the transition process into the public schools when the child turns three years of age.
A part-time parent advocate will need to be recruited to ensure that all aspects of the project are family-centered and culturally sensitive. This individual will work with EHDI-M in the development of educational materials, inservice training and in the encouragement of parent support groups.
A full-time Data Entry Operator II will assist with data entry and clerical support for inservice and workshop training including correspondence, brochures, mail-outs, etc. A dedicated line and fax machine will be installed in the EHDI-M office to ensure. confidentiality of faxed materials.
CHAPTER VII. COLLABORATION AND COORDINATION
In 1998 and 1999, EHDI-M participated in the MCH Marion Downs National Newborn Hearing program at the University of Colorado in Boulder and looks forward to close collaboration with the new MCH national technical assistance center. Through collaboration with state universities, MSHA, MDE, SKI*HI, Mississippi School for the Deaf, and Magnolia Speech School (an oral program located in Jackson), EHDI-M has presented at state meetings, and cosponsored workshops and invited speakers. EMDI-M is collaborating with the Mississippi University for Women in a longitudinal study tracking the development of children with unilateral hearing loss.
Through the proposed project, EHDI-M will continue its history of collaboration by organizing a state-level Hearing Intervention Taskforce. This taskforce will be comprised of audiologists, speech/language pathologists, FSEIP staff, University representatives, parent advisors from SKI*HI and Magnolia Oral School, parents of children with hearing loss, and representatives from the deaf community. This Task Force will be charged with four main areas of interest: Legislative and Reimbursement Issues, Tracking and Follow-up, Education (IFSP, IEP, Inservice Training), Audiology Guidelines and Recommendations. An HRC will be present at all meetings in order to facilitate discussion and action based on the current needs of EHDI-M.
CHAPTER VIII. GOALS AND OBJECTIVES
Goal 1: Tracking and Follow up--The first goal of this project is to develop and refine comprehensive collaborative tracking and follow-up procedures and ,forms used by EHDI-M and FSEIP to improve the number and timeliness. of referrals received through diagnostic evaluation by three (3) months and intervention by six (6) months of age.
Objective A: To record a steady improvement in the timeliness and number of children being diagnosed over the first year of the grant. This will be measured using the Audiological Diagnostic/Follow-up Report Form completed by diagnostic centers statewide. (see Appendix, page 61) Currently, the average age of diagnosis is 9 to 12 months of age. Through this project, average age of diagnosis will improve to eight (8) months by the end of the first year of the grant and to 6 months by the end of the second year to three (3) months by the end of the project period.
Objective B: To see an increase in the number and timeliness of referrals for children for developmentally appropriate intervention by six (6) months of age. This will be measured by obtaining information from Individualized Family Service Plans (IFSP). Currently, on average, intervention is initiated at nine to 12 months of age. This average will improve to six months of age by the end of the first year of the grant and to three months of age by the end of the grant period.
Objective C: EHDI-M staff will meet with a small group of District Coordinators from FSEIP to draft a comprehensive policy and procedures document covering all aspects of the EHDI-M program, which will become part of the procedures in the FSEIP Service Coordinator Manual. This will be accomplished by March 31, 2001.
Objective D: EHDI-M staff will meet with each District FSEIP Coordinator and their staff, MCH nurses, audiologists in order to explain the new procedures/ tracking forms and to discuss the importance of early identification of hearing loss and how this differs from other disorders. The meetings with HRC's and EHDI-M staff will be accomplished by June 31, 2001.
Objective E: To modify genetics/metabolic screening reporting forms used by hospitals statewide to acknowledge/report the occurrence and outcome of initial hearing screening. This information will be used to facilitate a data linkage with the Genetics Screening Division. This will facilitate data matching and. .allow EHDI-M to ensure the completeness of data and the effectiveness of hospital hearing screening reporting processes. This will be accomplished by the end of the first grant year.
Goal 2: Training/Public Awareness--The second goal is to establish a comprehensive statewide training effort directed toward audiologists, speech pathologists, physicians, early interventionists, educators and parents. This effort will include the development of a statewide Hearing Intervention Task Force and sponsorship of effective conference speakers. Training. will be ongoing and focus on the evolving needs of those involved with EHDI-M implementation through the entire project period.
Objective A: To hire a full time audiologist consultant as Part of the EHDI-M stag. This individual will oversee the clinical aspects of diagnostic services and ensure the appropriateness of chosen intervention strategies by providing consultation and technical assistance statewide. This objective is a high priority and will be accomplished by the end of the third month following the grant award.
Objective B: To increase the numbers of children being identified with congenital hearing loss including mild-to-moderate hearing losses before three (3) months of age. HRC's will meet with audiologists and physicians in order. to provide them with literature regarding the effects of hearing loss (including minimal hearing loss) on speech/language, social and cognitive development. This task has already been started and will continue on a larger more intense scale over the life of the project. Documentation of all encounters and events will be maintained.
Objective C: To see an improvement in . the .level and comfort "of diagnostic and intervention procedures provided to children with hearing loss, four (4) regional workshops covering EHDI-M implementation. and identified training needs will be organized around the state for each year of the grant. Improvement will be measured by professional surveys and client satisfaction surveys. An initial client survey will be conducted in June 2001 with follow-up surveys being collected annually. EHDI-M will work with a university program to develop and conduct the survey. Initial survey will be completed by the end of the first grant year and then continue as a component of the EHDI-M program.
Objective D: To complete and disseminate. the Parent Information/ Resource Manual. This manual is nearing completion but will be reviewed by members of the Intervention Taskforce, including parents of children with hearing loss and providers. This document will be completed and adapted for inclusion on the EHDI-M Web page by June 2001.
Objective E: EHDI-M, in collaboration with parents and professionals, will develop an easily readable, culturally-sensitive brochure for parents whose children have been referred for audiological assessment and amplification. The brochure entitled "What to Expect" will be finalized by October 1, 2001. This brochure will be available for dissemination by December 1, 2001.
Objective F: To fill any open contractual IIRC positions by July 2001.
Goal: 3 Clinical In-service Training and Mentoring of Audiologists and other Medical Professionals--The third goal of the project addresses the apparent lack of experience and skills of the audiology community in providing diagnostic services to infants.
Objective A: To increase by 50 % the number of audiologists who report their skills as satisfactory in providing diagnostic services to infants by the end of the project. Approximately 10% of the licensed, practicing audiologists in 1997 reported their skills to be satisfactory. A follow up needs assessment to include a self administered skills inventory will be carried out by EHDI-M with audiologists to determine the level of technical assistance and training needed. This activity will be completed by the end of the first grant year.
Objective B: To establish practice guidelines for diagnostic audiological services to newborns. Working with the EHDI-M Advisory Committee and others, the Audiology consultant will develop and implement audiology practice guidelines consistent with American Academy of Audiology, American Speech-Language Hearing Association, Joint Committee on Infant Hearing, and the American Academy of Pediatrics for practicing audiologists in Mississippi. This will be accomplished by the end of the first grant year.
Objective C: To develop and implement a mentoring process to improve the knowledge and skills of practicing audiologists in Mississippi. The audiology consultant in cooperation with the EHDI-M Advisory Committee, will develop and implement a mentoring process to assist practicing audiologists in improving their skills. This process will utilize available state-funded and retired. audiologists and the audiology consultant to address technical, clinical, and other care issues. The mentoring process will be developed and implemented by the end of the first grant year. Every licensed and practicing audiologist will be invited to participate. Training will focus on the needs identified in the skills inventory.
Goal 4: Evaluate the capacity of the intervention programs and services in the state to effectively meet needs of hearing impaired infants and toddlers and their families to include First Steps, SKI*HI through the MS School for the Deaf, Magnolia Speech School, Local Education Agencies, and others. This will be done to effectively focus resources, identify training needs, and to establish a starting point to effectively measure system changes.
Objective A: Determine the existing .capacity of the state to provide necessary and appropriate early intervention services to deaf and hard of hearing infants and their families to include: the operational budgets, supports of programs, existing staffing, distribution of SKI*HI contractual staff, and etc., through a contractual arrangement with an objective third party. Reporting will be completed and finalized into documentation for MS school for the Deaf, FSEIP, and EHDI-M staff by the end of the first quarter of the second grant year.
Objective B: Conduct a study to compare the efficacy of the existing early intervention model of service delivery in MS with that of other states. This will be accomplished by the same objective contractor as in Objective A by the end of the first grant year. Reporting will be completed and finalized into documentation for MS School for the Deaf, FSEIP, and EHDI-M staff by the end of the first quarter of the second grant year.
Chapter IX. Required Resources
Funding of this project will ensure the state's ability to comply with the goals and objectives of this grant. Through this project, funding of approximately 212 000 is requested for refinement of the existing EHDI-M program. Expenditure of funds will be in accordance with all applicable federal and state laws and in accordance with Generally Accepted Accounting Principle (GAAP).
Contracts will be developed for three full-time Hearing Resource Coordinators to provide statewide resources for hearing related issues to parents, providers and the FSEIP program. A certified audiologist will be hired to provide full-time audiologic participation in all components of the project (screening, diagnosis, and intervention). This individual will assist in developing guidelines for hearing aid selection, fitting, and verification, and working with the statewide audiology taskforce to identify topics for professional development. Also, this individual will address the important goal of evaluating the potential for a more united relationship with the SKI*HI program. A contractually funded parent advocate will ensure all aspects of the project are family-centered and culturally sensitive. This individual will be utilized in training efforts and in the development/selection of materials for families. A full time Data Entry Operator II position is requested to provide data entry and clerical support for the project staff for the duration of the project. Office equipment consisting of 3 desk-top computers, one notebook computer, a video projector, and' a plain paper fax machine is requested. Funding for travel to support in-state and out-of-state travel for staff and a stipend to support travel of EHDI-M Advisory Committee members and their designated guests 'is requested . Additionally, contractual funds for evaluation intervention services in MS are requested.
CHAPTER X. PROJECT METHODOLOGY
EHDI-M and CSHCN operate under the administrative umbrella of MSDH's Bureau of Child Health. EHDI-M has an array of resources to accomplish the purpose, goals and objectives of this project (see Appendix page 57). The EHDI-M's current staff consists of a Hearing Screening Coordinator, Diagnostic/Intervention Coordinator and Nurse Administrator. The part-time Audiology Consultant has provided feedback and input as needed on forms and procedures. Five Part-time HRC's have met monthly and served to plan the direction and needs of EHDI-M while providing ongoing service to their local districts in the way of parent education, inservices and consultation. The current project is asking for the expansion of the audiology consultant position, support for three full-time Hearing Resource coordinators, a medical records clerk/data entry clerk, and a * parent advocate. A review of expanded responsibilities for each staff and contractual position follows:
The Hearing Screening Coordinator will work closely with the hospitals to ensure the screening component of this project is implemented. The methodology will include reviewing each hospital's policies and procedures, monitoring screening forms for completeness and timeliness of appointment data. Hospital data will be compared with state vital statistics. Each facility will have on-site visits at least annually to in-service hospital staff on forms and procedures and to address specific concerns. The EHDI-M data system will provide for comparison of all aspects of the program to target any weakness that limits access to a hearing screen at or near birth. Referral rates of each hospital will be provided annually for comparison.
The Diagnostic/ Intervention Coordinator will work closely with the diagnostic centers to ensure the diagnostic component of this project is implemented. She will review audiological assessment data to document the percentage of newborns who receive a diagnostic assessment by three (3) months of age. If the center is having difficulty scheduling or locating a child, the Diagnostic/ Intervention Coordinator will initiate state tracking and follow-up procedures. Diagnostic Centers will be visited on-site at least annually or sooner if the facility requires additional support. The diagnostic centers will be provided with information regarding new forms and procedures and encouraged to comply with follow-up procedures.
The Audiology Consultant's role in EHDI-M will be expanded to provide full-time audiologic participation in all components of the project (screening, diagnosis and intervention). This certified audiologist will work with the statewide Hearing Intervention Taskforce's "Audiology Issues" working group to develop hearing aid, selection, fitting and verification recommendations for the state of Mississippi and will work to identify areas of need for professional development, particularly the management of mild to moderate hearing losses. This individual will continue to provide input to the EHDI-M staff in the development of forms and procedures and will continue to serve on the state Advisory Committee. Finally, the audiology consultant will address the important goal of evaluating the potential for a more coordinated relationship with the SKI*HI program.
The Data Entry Operator II will provide timely data entry into Infant and Toddlers Hearing Impaired Registry and clerical support for increased regional and state level training efforts.Hearing Resource Coordinators will work closely with families and FSEIP service coordinators to ensure the appropriateness and timeliness of services. In this capacity, they will be asked to participate in the Individualized Family Service Plan (IFSP) meetings as appropriate. They will assist within their regions in providing training to - physicians regarding EHDI-M procedures and the need and resources for prompt referral for audiologic testing. They will continue to provide education to parents of children newly identified with hearing loss, and will complete, maintain and distribute the Parent Hearing Information/Resource Manual. They will serve as representatives of EHDI-M on state and local hearing intervention taskforces. Finally, as part of their training effort, HRC's will provide information to physicians, audiologists and parents regarding the effects of mild-to-moderate hearing loss on language, cognitive, and educational development.
The Statewide Hearing Intervention Task Force will serve as a forum for those interested or concerned about EHDI-M, childhood hearing loss issues, available resources and education issues. Four "working groups" or subcommittees of Education, Tracking and Follow-up, Legislation and Reimbursement Issues, and Audiology Issues, will meet separately to accomplish specific goals and report back to the Hearing Intervention Task Force on all accomplishments. The initial tasks proposed for the group will be assistance with tracking and follow-up procedures and development of state and regional workshops for professionals.
Special interest will include diagnosis and management of children with mild/moderate hearing impairment.
CHAPTER XI. EVALUATION
Goal 1. Tracking and Follow-up
The diagnostic component of the Project will be evaluated by measuring the average amount of time between the third screen in the hospital and completion of the diagnostic evaluation process. Information from Hospital Reporting Form #288 (see Appendix, page 60) is entered into the database, as is the information from Audiologic Diagnostic/Follow-up Reports (see Appendix, page 61). With aggressive follow-up procedures, the average time between referral from the hospital screen to audiologic diagnosis should narrow, with the goal being diagnosis by three (3) months of age. It is anticipated that the average age of diagnosis will improve from 9-12 months at present to 6 months by March 2002 and to three months by March 2003.
The intervention component of the project will be evaluated through the use of an Intervention Tracking and Quality Report that will be developed and administered for each child by the HRC's on a three-month schedule. With aggressive follow-up procedures, the time between diagnosis of hearing loss and entry into an intervention program should become quicker with the goal being entry into intervention before six (6) months of age. It is anticipated that the average age of onset of intervention will improve from 9 to 12 months at present to 3. months by March 2003.
Goal 2. Training/Public Awareness
The second goal is to establish a comprehensive statewide training and awareness effort directed toward audiologists; speech pathologists, physicians, early interventionists, educators and parents. This effort will include the support of a statewide Hearing Intervention Taskforce that will develop and coordinate four regional and one state workshops/conference each year for the period of the grant.
Three full-time hearing resource coordinators will assist EHDI-M with tracking and follow-up, provide in-service training of physicians and service providers in their areas, handle local arrangements for regional workshops and continue providing information and training to families of hearing impaired children.
This component will be evaluated in two ways. First, the number of children with mildto-moderate hearing losses who are identified by three (3) months of age will be compared to national statistics. This number should more closely reflect national statistics after the first year of the grant. Client satisfaction surveys, administered to parents annually should show a clear improvement in the EHDI-M program from identification through enrollment in intervention. programs.
Goal 3. Clinical In-service and Training.
This goal and objectives will be evaluated by determining the current number of licensed practicing audiologists who are skilled and competent in providing diagnostic services to infants, developing a highly targeted needs assessment and skills inventory, and focusing training on
individual and unique needs of audiologists through mentoring. Self-reported skills inventory pre/post testing will be used to track changes in knowledge, skills, and comfort level during diagnostic service provision. This will be routinely monitored and reported on by the audiology consultant. All activities will be carried out during the first grant year and continue throughout the life of the project.
Goal 4. Intervention Services Evaluation
The objectives concerning intervention services will be evaluated by the successful identification of a contractor, completion of work according to time lines established within the contract, and the production of final documents for use by FSEIP. Objectives relating to program evaluation will be carried out within the first grant year.